Wednesday, December 31, 2008

Wisdom in an Email

One of my best friends sent this quote and message to me- I had to share, it touched me. Thank you to all my friends and family for your thoughts, support, understanding, space when I need it, hugs when I need them, drinks to be drunk and food to be shared- you have kept Felix and I sustained and for that we are truly blessed and thankful!

“All changes, even the most longed for, have their melancholy; for what we leave behind us is a part of ourselves; we must die to one life before we can enter another.” --Anatole France

Your experiences, while unique, are parallel to so many others’ experiences. You may feel alone at times, but you are not. You will find that when you are ready to share and re-connect with others, your true friends and family members will still be there.

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Finger-Sucking New Years!

Who would have thought I'd be welcoming in the new year with an infant?!? It's been an amazing year- we have much to be thankful for. We've traveled out of state several times- North Carolina for Tony's wedding, Colorado for Christina's wedding, and California.

We've seen all of our parents- that in itself is a blessing! My mom and Pam moved closer to us. We finally feel at home in Arizona- AND of course- GRACE!!! So amazing.... Grace is such a wiggle worm. She's continually wiggling out of position and stretching her long, long arms. The only time she is still is when we're cuddling together. The other day was a bit scary, she turned purple while we cuddled and far too many people got to see my breasts in the process, but we managed! Yesterday was a great day, we bathed and cuddled and she put herself to sleep sucking on her pointer finger. Her cheeks were so adorable!!! As we were leaving daddy encouraged Grace to grow- only 9 more ounces to go! The nurse practictioner overheard us and told us that she had "put in the order, so Grace may not have to grow." We had no idea what she was talking about, so she explained. Grace will need a CT scan before making a surgery decision, and they are hoping to get it in this Friday!! So- Friday she'll have a CT scan, possibly be put to sleep for it (the jury is out on that- more to come) and then the cardio team will meet on Monday to decide on her surgery date. This morning, Felix and I decided that I should spend the day with her- just mommy and daughter time, so that I can maybe overhear more about the CT scan. As luck may have it- I did! The surgery may happen as early as next week!! She's doing well on sickness-levels, but she can't gain weight as quickly as they'd like. They would like to wean her caffeine intake as this causes her to burn more calories, but because of her apnea issues, they are reluctant to do so. The surgery may be ugly- they potentially may not sew her back together right away because of the swelling. She'll go to the PICU (Pediatric Intensive Care Unit) for post-op recovery and then back to the NICU- and that begins our journey home!!! The physical therapist came and spent time with her today- she's doing everything she should. She's curling into a ball, touching her face, pushing with her feet, controlling her neck- she's superbaby! Grace is just beautiful, I wish that everyone could see all the little things she does- she has more personality than any other baby I've met- damn Angelina Jolie for calling her babies lumps- they DO have personality! Grace's little boyfriend, Tanner, went home this week, it was sad for us, but good for his family. Mommy (me) is learning to knit (as if Grace didn't have enough blankets!) and that's keeping her pre-occupied. Mommy and Daddy are looking forward to ringing in their first new year as parents! Here's to health, happiness and baby kisses in 2009!

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Monday, December 29, 2008

The Growing of Grace

I honestly have no idea how people possibly work and mother babies in the NICU. One minute Grace is fine, doing excellent- starting feeding via bottles, and the next she's overexhausted, forgets to breathe, stops her heartrate, and stops acting normal. Just when I think we're doing well- we crash again.... this is the craziest rollercoaster ride that I've ever been on! Today was a good day, for the most part- she had a few issues with getting enough oxygen, but the nurses are doing their best to keep her in a balance from over-satting and de-satting... and Grace can't make up her mind on what she wants to do. This is getting harder for us to maintain normalcy.... friends still want to see us, bills still have to get paid, dogs still have to get exercise, phone calls still have to get returned.... I find it harder to stay at work, and with all of the lifestyle changes we're making (permanent) I'll probably need to stay home with her at some point- so the stress list goes on and on.... For the good news, I am learning to knit with my NICU mommies- I've met some really amazing people here. I can't explain how my life has changed over the past few weeks- it sounds so cliche, but so true. I often hear people that are in the military say that they come back different people, but never really believed it- but I'm experiencing this change first hand. I hope that the people I knew and loved before will know and love this new version of me- I'm so different. Different things stress and worry me, and different things bring me joy. It's an amazing journey- I'm in LOVE with my little girl. I would truly do ANYTHING for her. :)

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Friday, December 19, 2008

Ouch! My NEC hurts...

I'll post more about our experience with this tonight- but here's a quick bit of info about the last week of Grace's life!)

Good news 1st- she's 3 pounds 8 ounces!!


As if the birth of a premature baby isn't stressful enough, there are a number of diseases premature babies can experience within the first weeks of life. Necrotizing enterocolitis (NEC) is one of them. "Necrotizing" means the death of tissue, "entero" refers to the small intestine, "colo" to the large intestine, and "itis" means inflammation. But knowing what the words mean is only the start of understanding this infant disease.

What Is Necrotizing Enterocolitis?
A gastrointestinal disease that mostly affects premature infants, NEC involves infection and inflammation that causes destruction of the bowel (intestine) or part of the bowel. Although it affects only one in 2,000 to 4,000 births, or between 1% and 5% of neonatal intensive care unit (NICU) admissions, NEC is the most common and serious gastrointestinal disorder among hospitalized preterm infants.

NEC typically occurs within the first 2 weeks of life, usually after milk feeding has begun (at first, feedings are usually given through a tube that goes directly to the baby's stomach). About 10% of babies weighing less than 1,500 grams (3 lbs., 5 oz.) experience NEC. These premature infants have immature bowels, which are sensitive to changes in blood flow and prone to infection. They may have difficulty with blood and oxygen circulation and digestion, which increases their chances of developing NEC.

What Causes It?
The exact cause of NEC is unknown, but several theories exist. It is thought that the intestinal tissues of premature infants are weakened by too little oxygen or blood flow, and when feedings are started, the added stress of food moving through the intestine allows bacteria that are normally found in the intestine to invade and damage the wall of the intestinal tissues. The damage may affect only a short segment of the intestine, or it may progress quickly to involve a much larger portion.

The infant is unable to continue feedings and starts to appear ill if bacteria continues to spread through the wall of the intestines and sometimes into the bloodstream. He may also develop imbalances in the minerals in the blood. In severe cases of NEC, a hole (perforation) may develop in the intestine, allowing bacteria to leak into the abdomen and causing life-threatening infection (peritonitis). Because the infant's body systems are immature, even with quick treatment for NEC there may be serious complications.

Other factors seem to increase the risk of developing NEC. Some experts believe that the makeup of infant formula, the rate of delivery of the formula, or the immaturity of the mucous membranes in the intestines can cause NEC. (Babies who are fed breast milk can also develop NEC, but their risk is lower.) Another theory is that babies who have had difficult deliveries with lowered oxygen levels can develop NEC. When there is not enough oxygen, the body sends the available oxygen and blood to vital organs instead of the gastrointestinal tract, and NEC can result. Babies with an increased number of red blood cells (polycythemia) in the circulation also seem to be at higher risk for NEC. Too many red blood cells thicken the blood and hinder the transport of oxygen to the intestines.

NEC sometimes seems to occur in "epidemics," affecting several infants in the same nursery. Although this may be due to coincidence, it suggests the possibility that it could in some cases be spread from one baby to another, despite the fact that all nurseries have very strict precautions to prevent the spread of infection.

Signs and Symptoms
The symptoms of NEC may resemble other digestive conditions. Every infant experiences the symptoms of NEC differently, which may include:

poor tolerance to feedings
feedings stay in stomach longer than expected
decreased bowel sounds
abdominal distension (bloating) and tenderness
greenish (bile-colored) vomit
redness of the abdomen
increase in stools, or lack of stools
bloody stools
More subtle signs of NEC might include apnea (periodic stoppage of breathing), bradycardia (slowed heart rate), diarrhea, lethargy, and fluctuating body temperature. Advanced cases may show fluid in the peritoneal (abdominal) cavity, peritonitis (infection of the membrane lining the abdomen), or shock.

Diagnosis and Treatment
The diagnosis of NEC is usually confirmed by the presence of an abnormal gas pattern as seen on an X-ray. This is indicated by a "bubbly" appearance of gas in the walls of the intestine, large veins of the liver, or the presence of air outside of the intestines in the abdominal cavity. A surgeon may insert a needle into the abdominal cavity to withdraw fluid to determine whether there is a hole in the intestines.

The majority of infants with NEC are treated medically, and symptoms resolve without the need for surgery. Treatment includes:

stopping feedings
nasogastric drainage (inserting a tube through the nasal passages down to the stomach to remove air and fluid from the stomach and intestine)
intravenous fluids for fluid replacement and nutrition
antibiotics for infection
frequent examinations and X-rays of the abdomen
The baby's belly size is measured and watched carefully, and periodic blood samples are taken to determine the presence of bacteria. Stools are also checked for blood. If the abdomen is so swollen that it interferes with breathing, extra oxygen or mechanically assisted breathing (a ventilator) is used to help the baby breathe.

If the infant responds favorably, he may be back on regular feedings within 72 hours, although in most cases feedings are withheld and antibiotics are continued for 7 to 10 days. If the bowel perforates (tears) or the condition worsens, surgery may be indicated. Severe cases of NEC may require removal of a segment of intestine. Sometimes after removal of diseased bowel, the healthy areas can be sewn back together. Other times, especially if the baby is very ill or there is spillage of stool in the abdomen, the surgeon will bring an area of the intestine or bowel to an opening on the abdomen (called an ostomy).

Most infants who develop NEC recover fully and do not have further feeding problems. In some cases, scarring and narrowing of the bowel may occur and can cause future intestinal obstruction or blockage. Another residual problem may be malabsorption (the inability of the bowel to absorb nutrients normally). This is more common in children who required surgery for NEC and had part of their intestine removed.

Caring for Your Child
NEC can be extremely frightening to parents. Parents who are deprived of the experience of feeding their babies will certainly feel frustrated - their infant is so small, it just doesn't feel right to stop feeding him. As important as it is to be able to hold and bond with your baby, this may not be possible while the baby is in critical condition.

Listen to and take comfort from the NICU staff - they are trained and eager to support parents of preemies as well as the preemies themselves. Remember that there's a good chance that your baby will be back on regular feedings within a short time. By that time, you'll be more than ready to hold and caress him.

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Tuesday, December 16, 2008

Shower & Spoils

I was very spoiled during my baby shower! It was great to see my girlfriends and have some "me" time... I actually ended up having a whole bottle of champagne (mixed with OJ, of course!)... My dad and step-mom came to the hospital while we were at our shower, so they had some special Grandma & Papa time.

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Saturday, December 13, 2008

Two Women

Once there were two women who never knew each other,
One - you do not remember, the other you call mother.
Two different lives shaped to make yours,
One became your guiding star, the other became your sun.
The first gave you life, and the second taught you to live in it.
The first gave you a need for love and the second was there to give it.
One gave you a nationality; the other gave you a name.
One gave you the seed of talent; the other gave you an aim.
One gave you emotions; the other calmed your fears.
One saw your first sweet smile; the other dried your tears.
One gave you up - that's all she could do.
The other prayed for a child and God led her straight to you.
Now you ask through all your tears the age-old question through the years;
Heredity or environment - which are you a product of?

Neither, my darling - neither - just two different kinds of love.

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Friday, December 12, 2008

Hungry Breath Holding Hippo

It has been a very long week- working and caring for a baby in the NICU is hard work! Today I'm preparing for our weekend, my baby shower and grandpa and grandma's visit. They fly in tomorrow morning and I know they can hardly wait to meet their new granddaughter. Grace is doing extremely well, we're still in a holding pattern. Grace was put back onto caffeine last night. Apparently premature babies sometimes "forget" to breathe, and they'll hold their breath. Caffeine stimulates a part of their brain that reminds them to breathe. Grace started her life on caffeine, but they took her off of it 3 days ago. Yesterday she held her breath twice (this is not dangerous or abnormal) so they've put her back on. She's up to 3cc's of breast milk and doing really well. She gained another ounce!!! She's officially @ 3 lbs, 3 oz. We did the math, 2 kilos is 4 lbs, 4 oz, so if she continues to gain an ounce a day, we'll be looking @ her surgery around the New Year. The adoption is going smoothly- it always has it's ups and downs, but we're definitely on the up.

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Monday, December 8, 2008

Sweet Treats

We had our 1st day back to work- albeit only for 4 hours! It was so hard to be away from her- but I know we have to so that we have time to spend with her when she comes home. Grace is hovering around 3 pounds now, with them trying to fatten her up before her 1st surgery. Originally we were given a potential surgery date of next week Monday, but now they're using the 2 kilo weight goal, so who knows when that will be?!? They've put Grace back onto the diuretic which means she pretty much pees non-stop, but this keeps fluid away from her heart and lungs. We've been using the Kangaroo Care model, which allows us to nap with her using skin-on-skin contact. It's the highlight of our days!!! Our neighbor, Blair made cupcakes for the NICU department- what a hit! Everyone was so thankful and the cupcakes were adorable.

We had a meeting with the attorney and Danelle again today and it looks like we'll be bringing an agency into the mix too, so that we can ensure social services assistance for Grace's medical procedures. Unfortunately, the agency is more money, but again, we'll make it through. Every day that we spend with Grace, the more we become willing to do ANYTHING we have to- she's our life now!

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Saturday, December 6, 2008

The Art of Breast Milk

Another great relaxing day today! I saw the endocrinologist today about breastfeeding- I will be taking so many hormones!! Poor Felix, he'll have to put up with me over the next few months. The hormones and medications and herbs will "fake" my body into thinking it's pregnant over the next 5 weeks, and along with pumping, I should be able to generate some milk. We'll see- fingers crossed! For now Grace is on donor breast milk that the hospital is supplying- thank God for the power of prayer! Felix and I practiced "Kangaroo Care" today. Apparently, it's a type of care where the baby lays on the bare chest of a parent to increase bonding, growth, stability, etc. I had to sit still for approximately 3 hours- but it was so worth it! I could actually feel my energy being taken by her, but I didn't mind, I had lots to give. I'm officially whooped tonight, but looking forward to another quiet day at the hospital. Grace's surgery is going to happen within the next 2 weeks. Grandma and Grandpa from Wisconsin fly out next week Saturday and Sunday is my baby shower. :) Looks like a great week ahead.

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Brown Eyed Girl

Grace's central line was succesfully placed into her arm! Grace was slightly medicated in order to get the IV installed, and she was sound asleep when we got to the hospital around 12:30 pm. We grabbed some lunch and upon our arrival we heard our little girl fussing. Together Felix, myself and her nurse calmed her down, changed her dirty diaper and relaxed her. Once she relaxed, she opened her eyes for the very first time. Grace has beautiful brown eyes! We are hoping that we'll see more of our Brown-Eyed Girl's eyes in the coming days.

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Tuesday, December 2, 2008

Spilled Flower Water

While out buying flowers and a card for Grace's birthmom, we received a phone call from her sister instructing us to get to Phoenix Children's Hospital ASAP. I panicked, running out of Safeway without paying for the items and knocking down the flower vase filled with water in the process. We ran to the car and drove away as fast as we possibly could. During the drive, we were called back and told to come to the original hospital and that the doctors would explain more. At the hospital we were told that they had discovered a tiny heart murmur which led them to believe that Grace had a potential heart defect. Because of the seriousness of the defect, Grace was going to be life-flighted by helicopter to Phoenix Children's Hospital.

We tried to stay calm amidst the stressful situation and left for PCH (Phoenix Children's Hospital) to be with Grace. At PCH Grace was placed in their NICU and doctors and cardiologists closely examined her and performed echo cardiograms.

Grace was diagnosed with Pulmonary Atresia with VSD, also known as Tetralogy of Fallot. PCH performs surgeries for this type of birth defect 100's of times per year, but because of her low birth weight there was some concern. Over the next two weeks they would be working on getting Grace to gain weight as furiously as possible, with her first surgery taking place as early as 2 weeks from her birth date.

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Monday, December 1, 2008

She's Here!

Danelle had been having some pre-term labor and we had spent many a night at the hospital. They had given her anti-labor meds, but she didn't like they way they made her feel. On our final few nights in the hospital, they thought the baby was going to come- way too early. They gave Danelle the steroid shots to help develop Grace's lungs, just in case. Danelle apparently checked herself out AMA (Against Medical Advice), but we weren't aware- thinking she had been discharged.

I went to work December 1st like any normal day. After work I went with Jeff, Kelly and Felix to Target @ Lake Pleasant to do some last minute Christmas decor purchases. Danelle called while we were there and told me that she thought she may have eaten some rotten linguica- and her tummy was really hurting. I suggested that it could be labor, but Danelle didn't think so. So, we went about our shopping and then went home. Felix was a nervous wreck- he got in the shower, packed a suitcase, and packed baby stuff. I thought he was nuts- he swore he just had a "feeling" that Grace was going to be born tonight. At 10 pm, we got the call from Danelle. Her water broke and the ambulance was on the way. By the time we got to the hospital, Danelle was dilated 10 cm, and was getting prepped for an emergency C-section. Grace was coming- NOW! Jennifer, Danelle's sister, was going to be in the delivery/op room with Danelle, but she hadn't arrived yet. They dressed me in scrubs and just as they were wheeling Danelle away, Jenny came running in. I quickly exchanged clothing with Jenny- here are some funny photos!

Grace was born @ 11:49 pm. She weighed 3 pounds, 6.3 ounces. She scored a 9 and 10 on her Apgar scores. We were over the moon- we were finally parents!! We had no idea what was ahead for us...

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